Compassionate Care and Organization of Healthcare Services for a Successful Transition in Rheumatology (BOOST-R)

The transition from pediatric to adult care is a critical period for young people with chronic inflammatory rheumatic diseases (CIRD) and is associated with risks of poor self-management, loss to follow-up, and disease worsening. Although structured transition programs have been recommended, real-world data on their effectiveness in rheumatology remain limited.

Since 2018, a structured transition program has been implemented at Bicêtre University Hospital (AP-HP, France), combining early transition preparation, a therapeutic patient education (TPE) workshop, and a joint pediatric-adult transition consultation. Some patients benefit from both components, while others receive a transition consultation only.

The BOOST-R study is a monocentric, non-interventional observational study designed to evaluate the impact of different transition modalities on self-management after transfer to adult care. The primary objective is to compare transition readiness, assessed using the validated French version of the Transition Readiness Assessment Questionnaire (TRAQ-FR), between patients who received a TPE workshop plus a transition consultation and those who received a transition consultation only.

Secondary objectives include evaluating continuity of care after transition, identifying factors associated with successful transition, assessing the contribution of the RESRIP support network, and describing patients who did not benefit from structured transition support.

Study Overview

• Status: Recruiting
• Conditions: Chronic Inflammatory Rheumatic Diseases of Childhood; Juvenile-Onset Chronic Inflammatory Rheumatic Diseases; Transition of Care in Chronic Inflammatory Rheumatic Diseases

Detailed Description

The transition from pediatric to adult healthcare services represents a vulnerable period for adolescents and young adults with chronic inflammatory rheumatic diseases (CIRD). This phase is associated with increased risks of poor treatment adherence, disruption of follow-up, and adverse disease outcomes. While structured transition programs have been shown to improve patient autonomy and continuity of care, evidence in rheumatology remains limited, particularly regarding real-life effectiveness after transfer to adult care.

At Bicêtre University Hospital (AP-HP, France), a structured transition program has been progressively implemented since 2018 in collaboration with adult rheumatology and internal medicine departments. This program includes early transition information, progressive empowerment, a therapeutic patient education (TPE) workshop (MIRAJE program), and a joint pediatric-adult transition consultation. In parallel, some patients benefit from additional educational and administrative support provided by the RESRIP network after transition.

The BOOST-R study is a monocentric, observational, non-interventional study conducted in the pediatric rheumatology department of Bicêtre University Hospital. Adult patients with a diagnosis of CIRD who were followed in pediatric rheumatology and participated in a joint pediatric-adult transition consultation between 2018 and 2024 are eligible. Patients are contacted by postal mail and invited to complete an online questionnaire after receiving study information and having the opportunity to express non-opposition.

The primary outcome is transition readiness assessed using the French validated 20-item Transition Readiness Assessment Questionnaire (TRAQ-FR). The primary analysis compares the mean total TRAQ-FR score between patients who benefited from a TPE workshop plus a transition consultation and those who received a transition consultation only. Higher TRAQ-FR scores indicate better self-management and readiness for adult care.

Secondary outcomes include indicators of continuity of care after transition, such as number of adult care visits, delay to first adult visit, treatment adherence, and disease flares. Additional analyses will explore demographic, clinical, social, and educational factors associated with successful transition, evaluate the impact of support by the RESRIP network, and describe patients who did not benefit from structured transition interventions.

Statistical analyses will include descriptive analyses and multivariable regression models adjusted for relevant confounders, including age, sex, underlying disease, socio-professional status, and time since transition. Sensitivity analyses using propensity score methods will be performed to account for the non-randomized design.

The study involves no intervention and no additional risk for participants. Data are collected and managed in accordance with applicable French and European data protection regulations.

• Study Type: Observational
• Enrollment (Estimated): 50

Contacts and Locations

• Study Contact: Name: Perrine DUSSER, MD PhD; Phone Number: 0033 145213146; Email: perrine.dusser@aphp.fr

Study Locations

• France
  • Le Kremlin-Bicêtre, France
    • Recruiting
    • CHU Bicêtre
    • Contact: Perrine DUSSER, MD PhD; Phone Number: 0033 145213146; Email: perrine.dusser@aphp.fr

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: Adult; Older Adult
• Accepts Healthy Volunteers: No

• Sampling Method: Non-Probability Sample

Study Population

Young adults with a diagnosis of chronic inflammatory rheumatic disease previously followed in pediatric rheumatology, who transitioned to adult care after participating in a joint pediatric-adult transition consultation at Bicêtre Hospital between 2018 and 2024.

Description

Inclusion Criteria:

• Age 18 years or older
• Diagnosis of chronic inflammatory rheumatic disease
• Previously followed in pediatric rheumatology at Bicêtre Hospital
• Participation in a joint pediatric-adult transition consultation between 2018 and 2024
• Affiliated with a health insurance system
• No objection expressed to participation after being informed about the study

Exclusion Criteria:

• Patient lost to follow-up
• No participation in a joint pediatric-adult transition consultation
• Patient under guardianship, curatorship, or legal protection

Study Plan

How is the study designed?

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Transition Readiness Assessment Questionnaire - French Version (TRAQ-FR) Total Score	Total score of the Transition Readiness Assessment Questionnaire - French version (TRAQ-FR). The TRAQ-FR is a validated self-administered questionnaire assessing transition readiness in adolescents and young adults with chronic disease. It includes 20 items rated on a 5-point Likert scale (1-5). The total score is calculated as the mean of completed items. Score range: 1 to 5. Higher scores indicate greater transition readiness (better outcome).	Baseline (at the time of questionnaire completion in 2026, corresponding to 1 to 8 years after transition depending on individual transition date)

Secondary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Transition Readiness Assessment Questionnaire - French Version (TRAQ-FR) Domain Scores	Domain-specific scores of the TRAQ-FR, including: Medication management, Appointment keeping, Tracking health issues, Communication with healthcare providers, Managing daily activities, Each domain score is calculated as the mean of completed items within that domain. Score range for each domain: 1 to 5. Higher scores indicate greater transition readiness.	Baseline (at the time of questionnaire completion in 2026)
Continuity of adult care within 12 months after transition	Proportion of patients who attended at least one adult specialist consultation within 12 months after their last pediatric visit. Unit of measure: Percentage (%). Higher percentage indicates better continuity of care.	12 months after transition
TRAQ-FR Total Score according to participation in structured transition support programs	Comparison of TRAQ-FR total score between patients who participated in a structured transition support program (therapeutic patient education and/or structured support network) and those who did not. Score range: 1 to 5. Higher scores indicate greater transition readiness.	Baseline (at the time of questionnaire completion in 2026)
Continuity of adult care according to participation in structured transition support programs	Proportion of patients attending at least one adult specialist consultation within 12 months after transition, compared between patients with and without structured transition support. Unit of measure: Percentage (%).	12 months after transition
Successful transition defined by TRAQ-FR total score ≥4	Proportion of patients with a TRAQ-FR total score ≥4, considered indicative of high transition readiness. Unit of measure: Percentage (%). Higher percentage indicates more successful transition.	Baseline (at the time of questionnaire completion in 2026)

Collaborators and Investigators

• Sponsor: Assistance Publique - Hôpitaux de Paris

Study record dates

Study Major Dates

• Study Start (Actual): February 26, 2026
• Primary Completion (Estimated): August 26, 2027
• Study Completion (Estimated): August 26, 2027

Study Registration Dates

• First Submitted: February 9, 2026
• First Submitted That Met QC Criteria: March 9, 2026
• First Posted (Actual): March 13, 2026

Study Record Updates

• Last Update Posted (Actual): April 21, 2026
• Last Update Submitted That Met QC Criteria: April 20, 2026
• Last Verified: January 1, 2026

More Information

Terms related to this study

• Keywords: Self-management; Transitional care; Continuity of care; Therapeutic patient education; Pediatric to adult transition; Chronic inflammatory rheumatic diseases
• Other Study ID Numbers: APHP251147; 2025-A01787-42 (Other Identifier: IDRCB)

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No